Describe your case!
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Hey all! I'm so excited to find this group, as scoliosis is so rare and yet so life changing!
My journey started at 11 years old when they found my shoulder blades to be uneven during a school screening. I saw an orthopedist,; he diagnosed me with an S curve of about 18 degrees, and put me in a Boston Brace 23 hours a day from the age of 11 to 14. As some others have said, middle school is awful enough for a normal girl. A girl in a back brace is in for torture. I can remember having to change in the locker room and have people laugh and pull at the straps on my brace.I couldn't go to sleepovers because none of my friends moms knew how to lace my brace back up after I showered. *sigh* I also remember having to participate in gym class with all the "normal kids," and run the mile in the heat of the late summer. Those years were awful
When I turned 14, the doctors told me that my growth plates in both hips had calcified, meaning that I was done growing. They didn't expect the scoliosis to worsen much if at all. I still went back for xrays every 6 months. By the time i was 16, they could tell it was worsening once again. It was up to a 41 degree main curvature. They scheduled a fusion for April 17, 2000. I still remember the date of my surgery and celebrate it every year, with how far I've come. I was 16 years old at the time, and missed my junior prom and class trip. LOL
The surgery was rough. I was out of school for 6 weeks. They put in 2 Harrington rods from T3-L1, and took a bone graft from my right hip to fuse it all together. It was really painful for a few weeks, but it started to ease up and I was able to get back to normal activity. They said my spine was NOT ONLY crooked, but also ROTATED, which caused my rib cage to be deformed. They weren't able to fix that. One of my lungs is pretty compressed, which hinders my high cardio sessions...but I'm trying hard to overcome this!
My surgery was the best thing though. My scar is pretty thin on my back, even the bone graft scar isn't too bad. I'm much straighter than before (my main curve is still 14 degrees, it was the best they could do with me LOL). My only complaint is my lack of flexibility (It's pretty embarrassing when your yoga instructor calls you out in the class because you're not arching your back correctly, and you have to inform her that you no long have individual vertebrae!!!!).
ANYONE who is going through this, please feel free to add me!0 -
Oh, and current stats: 29 years old. 5'3" and 123 lbs! Trying hard to stay thin, because my doc told me that any extra weight will only cause me pain as I get older!0
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Oh, and current stats: 29 years old. 5'3" and 123 lbs! Trying hard to stay thin, because my doc told me that any extra weight will only cause me pain as I get older!
Doctor is definitely right. At my highest weight I was barely functional. I still have bad days now but they are much more rare.0 -
I had an S curve. I was operated on when I was only 8 years old. The top curve was fused from T1 to T10...(so almost all my T).
My notes say Top curve 51 degrees T1-T6 Bottom Curve 28 degrees T7-T10... in 1988 before the op. My bottom curve is starting to Kyphosis in my Lumbar region. My neck bones are actually moving into one because of my rod being so high my neck is kind of immobile.
I have a Harrington rod.
My scoliosis, is from a genetic disorder called Neurofibromatosis....0 -
goodness, that's a lot to go through at such a young age.I had an S curve. I was operated on when I was only 8 years old. The top curve was fused from T1 to T10...(so almost all my T).
My notes say Top curve 51 degrees T1-T6 Bottom Curve 28 degrees T7-T10... in 1988 before the op. My bottom curve is starting to Kyphosis in my Lumbar region. My neck bones are actually moving into one because of my rod being so high my neck is kind of immobile.
I have a Harrington rod.
My scoliosis, is from a genetic disorder called Neurofibromatosis....0 -
I had an S curve. I was operated on when I was only 8 years old. The top curve was fused from T1 to T10...(so almost all my T).
My notes say Top curve 51 degrees T1-T6 Bottom Curve 28 degrees T7-T10... in 1988 before the op. My bottom curve is starting to Kyphosis in my Lumbar region. My neck bones are actually moving into one because of my rod being so high my neck is kind of immobile.
I have a Harrington rod.
My scoliosis, is from a genetic disorder called Neurofibromatosis....
Wow that is rough that they did fusion that early! Did it affect your growth? Has your curve progressed since then?
My scoliosis seems to come from Ehlers-Danlos syndrome, although there is no official diagnosis for the type that I likely have (type 3). Just more of an "Oh you have enough of the symptoms that we think you have EDS".0 -
Yeah I had the fused operation at 8. It stunted my growth a bit. My torso is VERY VERY tiny. My legs and arms are VERY long for my height, as I come from a tall family.
I used to yoga and pilates at a gym, but I am hesitant to do this at home as I don't want to hurt myself.
My bottoms curve isn't really going L-R anymore, but my curve is going front to back now...
(I have pics on my profile of my spine yay!)0 -
Yeah I had the fused operation at 8. It stunted my growth a bit. My torso is VERY VERY tiny. My legs and arms are VERY long for my height, as I come from a tall family.
I used to yoga and pilates at a gym, but I am hesitant to do this at home as I don't want to hurt myself.
My bottoms curve isn't really going L-R anymore, but my curve is going front to back now...
(I have pics on my profile of my spine yay!)
Do you ever wear a brace? I wore a Boston Brace for years and years. I hated it then but sometimes I miss the support.0 -
UGH Yes. I wore a brace for like 8 months after surgery. I was home schooled that year as I went to a school district like in the next town over from newark, nj (not the best place in the world!). I miss the support of it.
I've looked into the adult one, I think it's called Spincore and it's semi flexible.0 -
Hi - I found out I had scoliosis at about 15 when the military rejected me as a pilot because "ejecting would snap your spine". I have a mild thoracic curve, which can't be treated because the risks from the surgery outweigh the benefits. It leads to a twist in my rib cage, and more problematically, a rotation of my pelvis which causes me no end of lower back pain when I don't manage it properly.
I'm currently running 2-3x a week and finding it OK. I do Strong Lifts 5x5, but have hit the point where the scoliosis is affecting my form on three of the lifts because of the strength imbalances and pelvic twist. I (should!) have regular chiro treatments to keep the pelvis and ribs more or less in line - my right shoulder blade forms a "winged scapular" and protrudes, it's just by how much... I'm about to switch my routine to be running twice a week, swimming once, pilates once and 2x lifting plus sun salutations every morning I can drag my backside out of bed on time. I need to strengthen up the weaker side muscles otherwise I'm simply making the imbalance and the various problems worse by strengthening everything in the wrong place.
I've only skimmed the thread, but many of you are inspirational. I have a mild case, but what you ladies have achieved with much more severe ones is amazing!0 -
I'm 62 and developed scoliosis at puberty. Back then, they didn't do anything except surgery for really severe cases. Since mine was only a "cosmetic" issue, it was ignored. I just hemmed my pant legs differently and allowed for the curve when I sewed dresses or skirts. By age 12, I was pretty tall at about 5'6", by the time I graduated from high school, I was 5'4.5" I'm now about 5'3".
My mother who is now 89 has scoliosis, too. She's added osteoarthritis to that and has gone from being close to 5'8" to 5'1"! Luckily, I don't have signs of osteoarthritis like she did at my age -- probably due somewhat to all this heavyweight pounding my bones have taken all my life.
Back pain has always been in the background but is worse over the last 10 years or so. I really got totally out of shape, though, after a reaction to statins that took awhile to diagnose. With total lack of core strength comes the back ache which I'm now working on again. One of the side effects I hope to have from my MFP life-change is less back pain due to more exercises.
Doctors? Pfft. They pay about as much attention to scoliosis as they do to passing comets. In other words, not much. Someone taught them in medical school that most scoliosis folks don't hurt so you don't either -- or at least there's nothing to be done about it.
So, with that, and aches from yesterday's volunteer stint at the food pantry re-packing thousands of Rice Krispie bars for distribution, I guess I'd better plan on doing some back strengthening exercises today instead of melting into my chair with this cat on my lap.0 -
Love this group! I'm so glad to read stories that sound sooo similar to what I've experienced!
As for my "story"....... I've had rods in, then out, all within a period of 5 years.
In 1999 (6th grade) one of my teachers noticed that my left shoulder was always much lower than my right. (looking back, you can see this in elementary photos too!) She referred me to the nurse, who contacted my mom to take me to a specialist... to which they then discovered I had an S-curve... ~50 degrees at the top, ~20 at the bottom. The doctors said that if they didn't fix it while I was young, it would get worse and start to cause issues with my rib cage/ lungs etc.
I had a spinal fusion to fix just the top part of the S, and they used 13 inch Herrington rods. The scar goes straight down the middle of my back. I'm very fortunately to have had a good recovery, aside from all the basic activity restrictions and an occasional case of what I like to compare to "restless leg syndrome" that went on every night for months after the surgery, and I still occasionally get when times are stressful (weird?).
Fast forward to 2004, senior year of high school. I wake up and have a huge lump between my shoulder blades- I'm talking like 1/2 a baseball was sticking out of my back. My parents think its a cyst so we go to a local doctor. He schedules outpatient surgery and drains it... turns out it wasn't a cyst. It was an infection. We head back to the specialist and find out I have a major staph infection. He says it must have been "laying dormant" all these years and maybe I got bumped the right way to make it active. (I was very active in sports and cheerleading.)
Long story short... they performed emergency operation and removed my Herrington Rods (my white blood cell count was so high at the time of reading, they were surprised I wasn't showing any signs of illness). The rods were apparently all corrodeded looking from the infection. I had to be on intravenous IVs for a month after, pic line and all, but fortunately to this day I'm still standing tall, active, and healthy... and I have my stainless steel Herrington's in a plastic baggie as a reminder.
My right hip still sticks out as a result of the surgery, and I still have about an ~18 degree curve on the bottom part of my back, but I just feel very blessed in general to not have had any complications and I hope it continues that way. I do worry about when my husband and I decide to have kids in a few years... especially after reading some of these stories.
Anyways, it was so great to read everyone's stories and OP- thanks for creating this group!:flowerforyou:0 -
I was diagnosed with scoliosis when I was 13 years old. I've always had back pain, sometimes I could not even catch my breath. I started to reduce my work outs, I gained weight, around 20 lbs, not a lot for most people, but for me it meant daily back pains.
I was told that I had 20 degrees of inclination to the right in my spine, and that I had to have surgery, which meant I had to wear some kind of metallic device on my back for the rest of my life. I opted out of the surgery and decided to lose weight to see if the pain would decrease.
So now here I am, I have lost some weight but I am trying to get to 50 kg, one of the doctors told me that if I managed to get there, the pain would be considerably easier to manage.
I am so glad that I found this group, have a nice day everyone.0 -
I am really beginning to wonder if I had this at a younger age and it just went undetected? The first time I even heard I had a curve was about 10 years ago when I was having a dexascan for bone density. The guy doing the scan asked me if I knew I had a curve. So I just thought it was caused from the bad spine I have. I was really surprised at age 50+ to hear I had scoliosis. I thought, wow that is a childhood thing, not an "old" lady thing. I thank you all for your posts here. I have not been here in a few months reading any and today decided to look around. I wish you all well with the problem and hope someday there will be an easy fix. I am looking at spinal fusion in the near future due to severe leg pain I have been having.
Oh yeah, my spine is also rotating to the left.0 -
I am really beginning to wonder if I had this at a younger age and it just went undetected? The first time I even heard I had a curve was about 10 years ago when I was having a dexascan for bone density. The guy doing the scan asked me if I knew I had a curve. So I just thought it was caused from the bad spine I have. I was really surprised at age 50+ to hear I had scoliosis. I thought, wow that is a childhood thing, not an "old" lady thing. I thank you all for your posts here. I have not been here in a few months reading any and today decided to look around. I wish you all well with the problem and hope someday there will be an easy fix. I am looking at spinal fusion in the near future due to severe leg pain I have been having.
Oh yeah, my spine is also rotating to the left.
Not all schools are good at looking for/catching it. We never had a screening at my school. My mom actually noticed mine because she had a childhood friend with a severe case, and that's when I started getting treatment (a brace). If we'd waited for a school official to catch it I probably would've ended up needing fusion.0 -
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Not all schools are good at looking for/catching it. We never had a screening at my school. My mom actually noticed mine because she had a childhood friend with a severe case, and that's when I started getting treatment (a brace). If we'd waited for a school official to catch it I probably would've ended up needing fusion.
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I couldn't agree more! The school did not catch mine and told a good friend of mine she had scoliosis when she didn't. Since it's hereditary, I have no idea why no one was keeping an eye on me. I got my daughter regular x-rays while she was growing up, knowing that almost everyone in my family has it.0 -
So glad I found this group! I was diagnosed w/scoliosis in 2007 but think I had it as far back as age 8 or so because I remember going to the pediatrician for a physical and he kept lifting up one of my shoulders/arms and said it was hanging lower than the other. I can see it now in pictures. Anyway, my chiro diagnosed me in 2008 through x-rays she took and said on a scale of 1-5, that I was a 3. She didn't make it seem like it was bad. I've always had lower back pain but if I remember correctly I'm pretty sure the curve was in the mid back area.
Like I said, I've always had back pain but I just lived with it. Just recently I had pretty bad back pain in the midsection of my back and then it moved to the lower right part of my back. So, that lasted about a week and I thought I was fine until I picked up my 21 month old 30 pound son too quickly and my lower back just seized up on me! That was Thursday and I have been in pretty severe pain since then. It hurts when I lift my left leg and to get up from laying down or sitting.
I'm wondering if carrying another child had an effect on the curve and made it worse. I've had two children since I was originally diagnosed and my spine hasn't been looked at since. The curve goes to the right. While I was pregnant and after I gave birth my left shoulder and right hip killed me. I started working out with P90X and lost a lot of weight and the pain eventually got better. But recently it seems to be getting worse. I know I need to see a doctor. I was thinking of making an appointment with an ortho who specializes in spines. What kind of doctors does everyone else see for this?0 -
I hardly see any doctors anymore, just because I live in a small town and no one knows jack crap about scoliosis.I'm just over them giving me wrong information and not helping me. But I used to go to chiropractors and later to orthopedics. Now I try to just go get a massage when the pain gets intolerable.
I have heard that the hormones in pregnancy can sometimes cause a curve to progress, but the research isn't totally solid.0 -
Thanks Wyodawn. I had never heard that about pregnancy. I'll look into that more. I guess I'm gonna break down & make an appt. W/a chiro. There's a specialist about an hour away. It sucks you don't have one nearby.
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Hi all. I've known I have scoliosis since jr, high when they did the checks for it. Nothing was done about it and now at 34 years old I have a 70 degree curve at the top and 40 degree at the bottom. I didn't have a full back xray until Dec. 2012 and had no idea it was so bad until then. I knew it affected me severely, having to go to pain management for years now. I have a repeat xray in December of this year to see what the change is. I have had 6 babies, and now am trying to lose about 50 lbs.0
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I hardly see any doctors anymore, just because I live in a small town and no one knows jack crap about scoliosis.I'm just over them giving me wrong information and not helping me. But I used to go to chiropractors and later to orthopedics. Now I try to just go get a massage when the pain gets intolerable.
I have heard that the hormones in pregnancy can sometimes cause a curve to progress, but the research isn't totally solid.
I recall reading that the extra weight and hormones can cause a temporary increase in curvature but that it goes back to baseline afterwards.0 -
Hi all. I've known I have scoliosis since jr, high when they did the checks for it. Nothing was done about it and now at 34 years old I have a 70 degree curve at the top and 40 degree at the bottom. I didn't have a full back xray until Dec. 2012 and had no idea it was so bad until then. I knew it affected me severely, having to go to pain management for years now. I have a repeat xray in December of this year to see what the change is. I have had 6 babies, and now am trying to lose about 50 lbs.
Sorry to hear that! How frustrating that they didn't do anything for you when you were in middle school and still growing!0 -
I have heard that the hormones in pregnancy can sometimes cause a curve to progress, but the research isn't totally solid.
Thank you for this - it's something I'll need to keep an eye on when the time comes!0 -
Hi everyone! Wow, I can't believe I've been on here for a few years now and just thought to look for a group of others like me!
I've had scoliosis since junior high. I've never been braced or had surgery. It was talked about a lot when I was young and I sometimes wish my parents would have went that route. I'm currently 34 (35 in a few days) and I have two boys. One pregnancy was more difficult than the other, but for the most part they were relatively uneventful despite what my chiropractor had predicted. I'm 5'3" and about 50lbs heavier than I probably should be. I don't know what my curvature degree is, honestly I think it's been awhile since that's been measured. It's an S curve and I have that very distinct shoulder drop. Nothing ever fits right. People always ask me what's wrong. I have to explain to my children all the time why this hurts or why they can't lean on me...I hate it!
I have a lot of pain in my lower back currently, left side just above my butt cheek. Also, my hips are very bothersome, my right knee is causing pain again, and my hamstrings on both legs are so tight that they have become a real pain in the neck! I see my chiropractor every other week and it's helped a lot. I don't do much more than that for pain...I don't like to take medication for it. I try to stretch.
I just don't know what to do for exercise! My doctor has said no running, jumping or anything jarring. I currently walk as much as possible (which sometimes isn't much because of the pain) I just don't know what to do? What has worked for you? I get so frustrated when I see people losing all kinds of weight and I want to be like that, then I remember I physically can't. I try not to let it bother me, but no one seems to know what this feels like!0 -
I just don't know what to do for exercise! My doctor has said no running, jumping or anything jarring. I currently walk as much as possible (which sometimes isn't much because of the pain) I just don't know what to do? What has worked for you? I get so frustrated when I see people losing all kinds of weight and I want to be like that, then I remember I physically can't. I try not to let it bother me, but no one seems to know what this feels like!
Low impact alternatives like the elliptical machine, swimming, and biking are great cardio options. I also have had a lot of success with weight lifting in reducing both my back pain (because of core strengthening I suspect) and the visible appearance of my back.0 -
I'd really like to purchase an elliptical or a recumbent bike. Doc also said anything where I'm leaning forward is not good either, so he thought biking in the traditional sense might be a bit too much. Weight lifting I'd be very curious about, love to join a gym but it's not an option just yet. There is a very small one in town, we've been wanting to look into it, but the nearest decent one is 10 miles away!0
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I'm so happy this group exists! I found out in middle school I had scoliosis and had surgery to correct when I was 15. I have two rods and a bunch of other hardware. I never really noticed a lot of pain while I was in high school and a moderately active person. Now that I am an adult and unfortunately spend a lot of time behind a desk, I'm noticing a significant increase in back pain. I try to stretch every few minutes but nothing seems to be helping. I am not overweight. I weigh about 128-130 and I am 5'4". I can't seem to get through the day without taking a few Ibuprofen. I've been trying lately to go without, as I am TTC. Has anyone that's had the surgery noticed that their back pain increased with pregnancy? I cannot afford to go to the doctors, the chiros, or a PT. I cannot afford to get a massage. I've been trying to gently work my back and core muscles but it seems to only make the pain worse. Has anyone noticed that the pain increases then as your muscles get stronger, decreases?
Any input would be greatly appreciated!!
Thanks! - Ashley0 -
Welp, here's my life story... At 7 years old, I had scheuerman's disease (2 vertebrae were too close together) but my mom was told it was nothing to worry about & no doctors monitored it. At 13 years old, I began complaining about a sore upper midback (Sometimes begging to stay home from school) but I was never taken seriously by doctors. Finally at 15 years old, I was diagnosed with scoliosis -____- The x-ray horrified me as mild as it was.
Left: Summer 2004 & 15-years-old, "28 degrees." Right: July 2012 & 23-years-old, "11 degrees."
- In 2004 (grade 10 - Almost 16yrs old) doctors found a 28 degree S-curve & claimed it would not move. I was sent home with some wimpy exercises like situps & superman raises. It didn't help & I stopped, but luckily my back pain alleviated a bit in the next year probably because I had stopped growing at 5'7". I had uneven hipbones.
- In 2006 (1st year college - 17yrs old) my back pain was at an all time low for now, but I started getting really bad pains in my sternum. Doctors checked my heart but discovered my spine was probably pulling at my ribs & my heavy school bag was aggravating it more. My mom bought me a schoolbag with a seatbelt-like strap (Crosses diagonally in front) which helped a bit.
- In 2008 (Starting university - 19yrs old) I was using a messenger bag (with same strap style) but began getting the sternum pains again. I was told to switch back to a regular schoolbag which would distribute weight on my back more evenly. My spine slowly began to ache again but not as bad as when I was 13-15. I started kickboxing on a whim & that alleviated A LOT of my day-to-day back ache. My instructor noticed I did sit-ups crooked & certain twisting exercises were more difficult to do on one side.
I also saw a chiropractor for a couple months which helped with pain a lot but I could not afford him & there was mixed opinions about whether he was doing more harm than good. I could not afford him after my dad's insurance coverage ran out for me. I noticed that year that I shrunk from 5'7" to 5'6 1/2"
- In 2010 (Still university - 21yrs old) I began noticing unwelcomed changes in my body. When lying flat on a floor, the left side of my ribcage began protruding more. In photos of my back, my right shoulder blade was lower & my crooked spine was more visible. This scared me since I was told my spine would not move anymore so I pushed for another x-ray. Doctors said it had gotten better by 7 degrees & was now 21 degrees instead of 28. It looked worse to me & I was skeptical because the x-ray was taken lying down instead of the usual standing up, but I said ok and left.
- In 2012 (Graduated - 22yrs old) I was doing Crossfit, metabolic resistance training & Stronglifts 5x5 with no problem, as well as running. In weightlifting, I noticed one arm & side of my body was way more flexible than the other, and when raised, one arm did not go straight up. I also noticed I could feel a pull on the right side of my upper spine if I tilted my head down which wasn't there before.
In September all Hell broke loose. I was in a new school for a language program which required me to sit at a desk for 7hrs a day (I was accustomed to college/uni schedule of only a few hours a day & much walking around). This AGGRAVATED my scoliosis like mad to the point where I couldn't fall asleep because of pain & Advil no longer worked. I had to leave certain school field trips because sitting on a wooden bench or plastic chair caused insane pain within 2hrs. I begged my doctor for codeine & she eventually gave me a prescription for it, as well as nightly muscle relaxers. I try to only take them under extreme pain.
- I had another x-ray that year (Pictured at the top of this post, on the right) & made sure it was done as I was standing up. I was told my spine magically cured itself to 11 degrees (From 28 degrees in 2005). I was skeptical of their results once more because it still looked worse to me & I was told scoliosis never "gets better" & isn't even supposed to move after I finished growing. They said my spine is correcting itself bur I have more pain than ever. I also noticed the vertebrae in my upper body are more bunched up than they were in 2005.
CURRENTLY, I have been on a search for a specialist in adult scoliosis for months because of pain. I've had 5 referrals
- 1 specialist never responded
- 1 orthopedic surgeon said he was the wrong kind of doctor for me
- 2 occupational therapists I called passed me off to someone else
- 1 physical rehabilitation centre said they only treat people in wheelchairs
- 1 physiatrist said they never received my referral after I called months later, so I sent a 2nd one that they said they received. 2 months later, still no call & I left another message yesterday.1 -
New progress picture shows my curve pretty bad:
I'm currently sitting at 25ish upper and 40ish lower, but I've never seen my upper curve look so pronounced! I think as I drop to lower bodyfat percentage, my spinal abnormalities are getting more obvious :-/0 -
I had scoliosis (55 degree curve top, 31 degrees bottom) that put me in a back brace from ages 10-15. Needless to say it didn't work and 2 weeks after I graduated high school I had a spinal fusion surgery. My spine is now fused with 2 rods and 8 screws from T-12 to L-3. I have had several setbacks in my journey, including a secondary diagnosis of spondylolisthesis in the L-5/S-1 area, resulting in nerve damage and a lot of pain. It just so happens the problem is right below my fusion where all of the pressure lands. I am currently 23 years old and trying to lose a little weight (20 lbs) to help take the load off my spine and help build some strong core muscles. My doctor has told me that if losing weight and pain management doesn't work then I will need to fuse my spine straight to my pelvic bone. Not something I am interested in! Many people have it worse than I do for sure, but I am worried about how bad my back could get in the future after having kids and natural wear and tear on the spine. It feels good to know I am not alone in my scoliosis journey and would love to hear from other people in a similar circumstance.0
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